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Reasons for not trying LDN

perchance dreamer

Senior Member
Messages
1,699
@digital dog, I don't know much about LDN. If I were to try it, I'd want to start at a really low dose because I have a lot of sensitivities.

I'd want to try it at a time in my life where it wouldn't be the end of the world if I were really tired and spacey for a couple of weeks in case it affected me like that.

LDN seems to work great for some people, but I'm sure you have to be patient, find the right dose, and put up with at least some side affects for awhile. I just don't have much tolerance for anything that messes with my sleep, even temporarily.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Since starting LDN recently I have been doing a lot of reading again on the subject. It would be useful I think if people would describe their experience with attached information on how they went about it. It is very tempting to do too much too fast especially with an initial positive reaction. Plus who knows what other meds it might react with--I don't take anything else except an occasional dose of lorazepam for sleeping. When discussing trying a product sometimes the details make a difference.
And then again, sometimes it just isn't going to work. But I started with somewhere between .3 and .4mg dose and I am seeming to tolerate .75mg that I now take. I don't plan to tempt fate by raising the dose yet. It seems to be working.

But your question was why don't more people try it. And I think Helen1 is right. It can be hard to get especially if you need a Rx and you want it covered by insurance and then your Dr has to be willing to try something new. I wish I had tried LDN sooner.
Even with the days I overdid it with my new 'feeling better' I rebounded back sooner. So far.

It does surprise me that not so many Dr's or indeed pharmacists know of LDN. Our usual pharmacist had no clue -- and seemed a little suspicious because he hadn't.
 

South

Senior Member
Messages
466
Location
Southeastern United States
As for people who have a bad reaction to LDN, there's a discussion on this other thread about it, perhaps a next step is to take one of these things that has an opposing effect on the immune system, abandoning the LDN.

Sort of like try LDN, and if it causes problems maybe that's a clue that you need the opposite of it. Maybe.

In this thread, Jaimes has a post with the word "dichotomy" in it:
http://forums.phoenixrising.me/index.php?threads/sick-but-never-sick.39474/page-3
 

JES

Senior Member
Messages
1,323
I doubt 0.1 mg will do much anything, the least dosage I could notice anything on was 0.5 mg. LDN's actions can be partially explained by it's blockage of certain opioid receptors, which causes an increase of endorphins (rebound effect), which in turn modulates the immune system. On the common 4.5 mg dosage this blockage will last for a few hours. The lower dosage you go, the less is the duration of blockage and thus less rebound effect kicks in. I stick to 1.5 mg because anything more causes daytime sleepiness.
 

daisybell

Senior Member
Messages
1,613
Location
New Zealand
DAisybell,
Did you have high thyroid antibodies? I'm interested that your thyroid stabilised on LDN without thyroid meds. How amazing! I cannot take the meds so I have to do something else; LDN seems the obvious choice but I doubt I will tolerate it.

JPV perhaps you will be okay on just 1mg. U have heard that some people only need this much. I wouldn't try and go higher if it is causing you problems and you are getting a reasonable response (a few good days).
When I was tested I did have raised antibodies, but I haven't had them retested recently. I have no idea if my thyroid levels will stay in the normal range, but am glad for any period without having to take other meds or go down the radioactive iodine route.. I have a probably absurd hope that if I can avoid irreversible treatment for my thyroid in the next few years, Rituximab might hold the answer to all my issues!!!
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
I started with match-head sized doses. And this was enough to give disturbed sleep, slight detox. I increased by this amount daily for about a week, then was at .5mg, slowly continued to increase from there. Very few sleep issues, thankfully, as I'd had insomnia prior to B12 saturation.
 

Gingergrrl

Senior Member
Messages
16,171
I may have already asked this here or in the other LDN thread and apologize if so but does anyone here know if LDN or even ultra low dose LDN would be counter indicated if you have MCAS or a mast cell disease?

Have not asked doctor or pharmacy yet but curious from you guys experiences if it can cause a histamine reaction or if it can over activate TH2 immunity and make the MCAS worse?

I've googled this but found nothing.
 

daisybell

Senior Member
Messages
1,613
Location
New Zealand
I may have already asked this here or in the other LDN thread and apologize if so but does anyone here know if LDN or even ultra low dose LDN would be counter indicated if you have MCAS or a mast cell disease?

Have not asked doctor or pharmacy yet but curious from you guys experiences if it can cause a histamine reaction or if it can over activate TH2 immunity and make the MCAS worse?

I've googled this but found nothing.
Sorry @Gingergrrl but I have no idea....
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@Gingergrrl As you know, my mast cell condition is nothing compared to you. I've never heard of any negative responses, but I can't recall the question being asked on the forums. But I just did a search, and first come across someone saying an MD suggested using the LDN as a transdermal application, to help w/ immune system. Here's someone on a masto forum reporting how great it's been. There's a lot of good info on this site, by an active member of the Yahoo forums, but there's no MC there.
 

digital dog

Senior Member
Messages
646
I have been reading a lot about this and contrary to what think it seems that a very low amount is all some people need. One lady started at 0.1mg and is at 0.6mg which is her optimal point. Another couldnt go above 1mg.
Perhaps some of us only need 0.5mg?
Ahmo would you say that you started at 0.1mg? Did this still give you insomnia? Insomnia is my biggest fear as it makes me very depressed. If I know it is temporary I could definitely handle it.
I may even start at 0.05.
Crazy I know.
 

digital dog

Senior Member
Messages
646
I wonder how many people who couldnt tolerate LDN started on too high a dose? Maybe even 0.5 was too high for them.
A lot of people say that it didn't suit them but perhaps if they were to try again at a minute dose and work their way up slower it could help them.
Perhaps...
 

Gingergrrl

Senior Member
Messages
16,171
@Gingergrrl As you know, my mast cell condition is nothing compared to you. I've never heard of any negative responses, but I can't recall the question being asked on the forums. But I just did a search, and first come across someone saying an MD suggested using the LDN as a transdermal application, to help w/ immune system. Here's someone on a masto forum reporting how great it's been. There's a lot of good info on this site, by an active member of the Yahoo forums, but there's no MC there.

Thanks @ahmo and will read all of this later today and appreciate your search for the info!
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
I started at match-head size...from a 3 mg capsule. You'll have to calculate what the dose might have been;)I'd say I continued adding this amount every day or 2 until I got to .5mg, which would have been where I could accurately gauge the amount. I stayed here for awhile. I always gauge my supps by asking my body. So I would have increased dose when I got a + sign.

I went up to 4.5mg, but my body preferred 4mg, and that's where I stay. I'm sure there's no lower limit..if it works for you, great. And on the Yahoo forum discussions arise re timing, whether or not night time dosing is essential. These have become quite heated. The answer seems to be, whenever you take it, it can work for you.:balloons:
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
The answer seems to be, whenever you take it, it can work for you.
I can't find the source anymore but I seem to remember reading that the doctor who initially recommended taking it at night has since changed his mind on the subject.

For the first 3 weeks I got a lot of insomnia from it no matter when I took it. This last week I seem actually be getting tired earlier, which is good as I have delayed phase sleep disorder.

I also seem to notice an ammonia type smell in my sweat and a bit of lower back pain which I assume are signs of detox. I'm starting to think it might be best for me to pulse the doses to give my body a chance to clear things out. Maybe 2-3 on and 1 day off. Has anyone else used a pulsed approach with success?
 

JES

Senior Member
Messages
1,323
I wonder how many people who couldnt tolerate LDN started on too high a dose? Maybe even 0.5 was too high for them.
A lot of people say that it didn't suit them but perhaps if they were to try again at a minute dose and work their way up slower it could help them.
Perhaps...

Most people tolerate LDN just fine, it's one of the medications with least side effects. 4.5 mg LDN was equally tolerable as placebo in the fibromyalgia study by Younger et al. [1]. We have to remember, most people on this forum are sick if not really sick, which can make them tolerate drugs like LDN worse. But in general LDN is safe if not the safest drug I can think of, I don't understand your concerns. People on these forums are taking Valcyte (carcinogenic) and other way more potentially dangerous drugs in order to get better. Naltrexone is given in 50 mg dosage to drug addicts, so it's even safe in that dosage.
 
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digital dog

Senior Member
Messages
646
Jess I understand your reasoning which is great to hear but I bet you ANYTHING that 0.1mg will still give me some nasty start up effects.
I've taken a load of seemingly 'safe' supplements and been disabled by them.
i think that people with ME have to be VERY careful starting drugs. Perhaps the sicker the person, the more tentative they should be.
 

JES

Senior Member
Messages
1,323
There is some variance of course to what people tolerate, I understand the concern from very sick people. 0.1 mg is 30-45 times less than the standard LDN dosage prescribed of 3.0-4.5mg. 99% of medications, if you take them 30 times less than indicated dosage, it means they will not produce any effect other than placebo. You are certainly not going to get the endorphin blockage-upregulation effect by taking 0.1 mg of LDN, which is one of the main mechanisms by which it modulates the immune system. But feel free to try as you wish, no problem.